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| Peak fall color in Marquette, Michigan. A little blessing in the madness. |
Actually, the physician care has been great. I do still love my oncologist. But the rest of the staff seems to be out to neglect me to death.
Let me explain:
I had my first chemo, as I told you: Taxol, Perjeta and Herceptin. I reacted mildly to the Herceptin with something called the "Rigors:" Sweating, shaking, and achy long bones, much like when I had the Neulasta. You all know from my last post that I ended up 24 hours later at the ER for an allergic reaction to the Taxol. Time to reconfigure.
Except that's not what happened. After I went home, nothing did, until I called. I had to call them, even though I was in the ER!! Last year, I was barely out of the ER before I was being seen.
"Well we aren't sure it was the Taxol," the nurse said. Yes, yes we are. I remember. Same reaction almost precisely, but much, much sooner.
Nurse calls back: "the doctor wants to see you now." Ok, you bet. I do too!
"We have a plan, no worries." The doctor explains. She's so calming. "We will substitute another drug I have in mind. But first, I need the allergist to look at you. And I will put in the request right now for your insurance for Navelbine."
Yeah, insurance gets to say what I get and what I don't get.
The doctor also explained that I might possibly have been resistant to the Abraxane now, so she didn't consider the third Taxane sister. Well, at least now I know. Meanwhile, we both admire the work so far. Yes, even if it must be Taxol on steroids and antibiotics, I must continue. This is working!!!
I can't get in to see the allergist until Tuesday, so this week will be skipped, the doctor says. The allergist is to call her, so that she can put in for the chemo. But we will be ready for what comes next.
I am getting ready today when I notice an appointment with the oncologist's PA pops in my appointments for Friday. That's when I notice the allergist's appointment is Thursday...after the chemo appointment. How did that happen?? I start working my way through a frustrating, difficult to navigate Interactive Voice Response (IVR) menu.
Every hospital CEO in the world should be forced to use IVRs every day. They'd clean them up in a heartbeat if they had to use them.
I have a critical work meeting as well. I'm waiting on hold for the one when I see I'm truly late for the other. I have to make a choice now...they need me in the meeting. I decide to hang up. My stomach is in knots.
Of course, someone calls me back while I'm in the meeting. I call back, wading through the IVR, after I'm no longer needed in mine. I explain my situation in tears to the allergist recep...and she starts going into action. I get a nurse in allergy, she sets me up with the best appointment she can manage, when the hubby walks by. He's livid too, and the nurse patiently works him through what happened -- or really what didn't. We both accept the allergist appointment. She takes it a step further and offers to call the oncologist's nurse and get them ready to. That was above and beyond.
But as near as we can tell, it was that nurse that didn't have the appointment right. Either way, we are now set up with an appointment, but it may be a bit late for chemo.
Dammit, I feel like every week that I'm outside of regimen means I'm outside of protocol, means that more cells are marching. My trust is gone. I have felt neglected ever since the rediagnosis.
I'm moving on. I have to.
Meanwhile, if I seem like a maniac on Facebook or my other accounts, be patient with me. You're my outlet for the insanity.
Oh, and I'm just as sick as I was before: symptoms are almost all GI, with smatterings of appetite, thrush, and my thyroid meds won't absorb. Lovely. How am I going to work now?
On the bright side: hubby and I have had many good talks, some stunning fall color and more. I'm ok. I'll be here for a long time to come. I just have to beware of neglect.
Ok, how's your treatment going? Post here, or in one of my forums. Or Facebook. Love you all.
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